LC9-More about ME

During my quest for information about myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome, I found a video series by Giles Meehan called “Get Well From ME”. Watching the series helped me to understand ME, other invisible illnesses, and my own circumstances more fully, which was a comfort. The series also helped me to glean how awkward it must be for others to understand what I’m going through. The first video offers a short version of Gile’s personal story after he contracted a serious illness that resulted in ME symptoms. In Video 1 he says: “I’m not exaggerating when I say that no one can really understand what it’s like to have ME unless you’ve suffered with it yourself, or lived under the same roof for a week with someone with ME.” This feels true to me and that is one of the reasons I’m writing about what I’ve experienced. To help others understand.

Giles’s wisdom and insights can apply to those with other chronic conditions including cardiovascular, pulmonary, arthritis and other pain syndromes, lupus, cancer, diabetes, neurological conditions, age related decline, and more. The series focuses on Giles’s lived experience with ME. He hails from England, so some references to healthcare providers will be different than what we are used to the U.S. He doesn’t sugarcoat the commentary about the difficulties associated with having ME. The (sometimes hard to hear) subject matter is delivered in a straightforward way, with a positive attitude and good humor. The videos were created twelve years ago, but the content is still relevant today. Most of the videos are between five and six minutes long. The longest video (#13) discusses treatment options for getting well that are ME specific.  

In Video 6 Giles speaks about what it feels like to have ME. “Imagine how difficult it feels having your life put on pause while the world carries on without you.” Videos 7, 8, and 9 address what to do when your friend has an invisible or hidden illness. Giles stresses that one of the most important ways to support your friend or family member is to believe them when they say they are feeling unwell or unable to participate in activities. Since ME/CFS and other invisible illnesses are often difficult to diagnose, there is a tendency to place the cause on depression, anxiety, or other mental health conditions. In discussing the perception that ME stems from mental illness, negative thinking, or “just being lazy”, Giles says, “Believe me. If we could just “get over it” we really would! He also talks about what is like for him when friends say, “but you don’t look sick” while in fact it might have taken all his energy to put himself together to meet up for a short walk or to take in a movie.

This reminded me of the “spoon theory” as described by Christine Miserandino, creator of the “But You Don’t Look Sick” website. Spoon theory is Christine’s way of explaining what it’s like to have limited energy due to an invisible illness (in her case, lupus). Spoons are used as a metaphor for the personal energy units needed for life’s daily activities. We “spoonies” need to plan for activities and remain mindful of our spoon limitations. For example, healthy people may have twenty or more robust spoons in a day and can do many things, remaining in good health. People with chronic conditions may have only ten or twelve spoons. If we use them all up getting dressed, making, and eating a meal, caring for children, and working, there will be no spoons left to do anything else. If we push past the available number of spoons for a day, we might “look good,” but not feel that way. Worse yet, pushing past the available spoons can result in a crash. This analogy is very helpful for those living with chronic illness. How many spoons do you have in a day? How can you be more mindful about using them wisely to remain in balance?

Getting back to the video series, Getting Well From ME, I am just so grateful for Giles’s research, his lived experience, and authentic sharing. Watching the series validated my lived experience and provided a feeling of optimism. I think it will do the same for anyone newly diagnosed with ME, Long Covid, or other chronic conditions. If you have a health challenge that requires “spoon counting” this series is very useful. Remember to pace yourself when watching! To my healthy, robust readers, if you know someone living with chronic conditions, using some of your abundant spoons to watch the series will increase your understanding and empathy about your friend’s experience. I’m wishing everyone a serene and balanced day today.

Thank you for reading! Next time, the Long Covid series explores toxic positivity vs. optimism.

Please Note:  The Long Covid series is intended to be both a memoir and an educational resource for the “living well” aspect of our mission. It is hoped that the content will increase empathy, support, and understanding for those living with chronic conditions.

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